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1.
Rehabil Psychol ; 2024 Jan 25.
Artículo en Inglés | MEDLINE | ID: mdl-38271015

RESUMEN

OBJECTIVE: To describe the training process for teen online problem solving (TOPS) for acquired brain injury (ABI) in adolescence. We evaluated feedback from training participants and therapists delivering the intervention to assess facilitators and barriers to adoption into clinical practice. METHOD: Therapist trainings took place between February 2020 and December 2021 and were primarily virtual due to the COVID-19 pandemic. We surveyed 190 trainees and 27 active therapists regarding their experiences with the training process and with delivering the intervention to families, respectively. Descriptive statistics were reported for Likert scale items. Open-ended survey responses were summarized using inductive thematic analysis by two independent coders, and themes were compared by profession. RESULTS: The majority of trainees reported that they felt comfortable or very confident using the TOPS intervention with patients following the training. Trainees reported that they benefited from clinician-centered and applied training components. Active therapists identified facilitators to TOPS implementation including the family-based therapeutic approach, virtual format, and the broad generalizability of the problem-solving framework. Barriers to implementation included low family engagement, comorbid mental health or language difficulties, and external family stressors. CONCLUSIONS: The implementation process for TOPS highlights the importance of and challenges to the dissemination of psychosocial interventions. As pediatric ABI remains an underserved population within behavioral health, future implementation work should address barriers in integrating evidence-based therapies within clinical practice. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

2.
Community Health Equity Res Policy ; 44(3): 265-279, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37202859

RESUMEN

A qualitative, community-engaged assessment was conducted to identify needs and priorities for infant obesity prevention programs among mothers participating in home visiting programs. Thirty-two stakeholders (i.e., community partners, mothers, home visitors) affiliated with a home visiting program serving low-income families during the prenatal to age three period participated in group level assessment sessions or individual qualitative interviews. Results indicated families face many challenges to obesity prevention particularly in terms of healthy eating. An obesity prevention program can address these challenges by offering realistic feeding options and non-judgmental peer support, improving access to resources, and tailoring program content to individual family needs and preferences. Informational needs, family factors in healthy eating outcomes, and the importance of access and awareness of programs were also noted. To ensure the cultural- and contextual-relevance of infant obesity prevention programs for underserved populations, needs and preferences among community stakeholders and the focal population should be used as a roadmap for intervention development.


Asunto(s)
Obesidad Infantil , Lactante , Femenino , Embarazo , Humanos , Obesidad Infantil/prevención & control , Evaluación de Necesidades , Madres , Pobreza , Consejo
3.
Int J Soc Psychiatry ; 69(8): 2031-2041, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37477264

RESUMEN

BACKGROUND: Mental health (MH) disorders are major causes of disability in Guatemala. Unfortunately, limited academic training and funding resources make MH care inaccessible to most people in rural Guatemala. These disparities leave many indigenous populations without care. Project ECHO™ is an educational model used globally to deliver virtual training for providers in rural/ underserved communities. The aim of this project was to implement and evaluate a Project ECHO™ program bridging MH training gaps for providers who serve rural communities in Guatemala. METHODS: The Project ECHO™ curriculum was implemented through a partnership between educational and nonprofit institutions in Guatemala City and the United States. Participants were primary care physicians and nurses working in rural Guatemala as well as medical/nursing/psychology students. Evaluation of its implementation was guided by a RE-AIM framework. Reach, effectiveness, adoption, fidelity, sustainability, acceptability, feasibility, and appropriateness were evaluated using a mixed-methods approach, using a pre-post survey and semi-structured focus groups. RESULTS: Forty unique participants attended the five sessions. Attitudes about mental health did not change quantitatively but self-efficacy improved in four of five modules. High quality fidelity scores were noted in two of five sessions. Sustainability scores across multiple domains were highly rated. Scores on instruments measuring acceptability, feasibility, and appropriateness were high. Focus groups showed two main themes: the curriculum filled a gap in education and further adaptation of the model might help improve the experience. CONCLUSION: Implementation of the Project ECHO™ educational model appeared to have good reach/adoption, showed improvements in self-efficacy, illuminated facilitators and barriers to sustainability, and was felt to be acceptable, feasible, and appropriate. Qualitative analysis supported these conclusions. Future directions would include ongoing evaluation and monitoring of further Project ECHO™ curricular experiences through this partnership and adaptation of this project to other learners and settings in Latin America.


Asunto(s)
Salud Mental , Población Rural , Humanos , Guatemala , Ciencia de la Implementación , Estudiantes
4.
Artículo en Inglés | MEDLINE | ID: mdl-37468742

RESUMEN

OBJECTIVE: To characterize the representation of Black and Hispanic cancer patients in tobacco treatment trials, and to offer recommendations for future research. METHODS: We conducted two systematic searches of the literature (2018, 2021) using 5 databases (MEDLINE via EBSCO, Pubmed, PsycInfo, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Excerpta Medica Database (EMBASE)) to examine the prevalence of tobacco trials that included Black or Hispanic cancer patients. Two coders independently screened all articles at title, abstract, and full-text to identify eligible trials. Information about the proportion of Black and Hispanic patients included, trial design features, and whether the authors analyzed outcomes for Black and Hispanic patients were documented. RESULTS: Of 4682 identified studies, only 10 published trials included and reported on the rates of Black or Hispanic cancer patients enrolled in their tobacco trial. The proportion of enrolled Black cancer patients ranged from 2 to 55.6%. Only our studies documented enrollment rates for Hispanics, and rates were less than 6%. None of the studies offered strategies to promote or the accrual of Black or Hispanic patients. DISCUSSION: There remains a large gap in the literature regarding the reach and efficacy of tobacco treatment for Black and Hispanic cancer patients. Black and Hispanic cancer patients remain largely under-represented in tobacco cessation trials, limiting the applicability of existing, evidence-based treatments. To optimize intervention generalizability, future studies should emphasize the targeted recruitment and engagement of these patients in tobacco trials.

5.
Health Equity ; 7(1): 148-160, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36895705

RESUMEN

Objectives: Instruments used to measure resilience have typically been developed in European or Anglosphere countries and emphasize personal factors of resilience. In addition to being a quickly growing ethnic minority group in the United States, Latinx individuals face unique stressors and protective factors that may contribute to resilience. This review sought to determine the extent to which instruments measuring resilience have been validated in U.S. Latinx populations and what domains of resilience those scales capture. Methods: A systematic literature review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards and included studies describing psychometric properties of resilience scales for Latinx individuals living in the United States. Articles were assessed for quality of psychometric validation; scales used in the final studies were assessed for representation of domains of the social ecological resilience model. Results: Nine studies were included in the final review examining eight separate resilience measures. The populations of these studies were heterogeneous geographically and demographically; more than half the studies only included Latinx populations as a subgroup. The breadth and quality of psychometric validation were variable across studies. The domains represented by the scales in the review most heavily assessed individual domains of resilience. Conclusion: The literature to date on psychometric validation of resilience measures in Latinx populations in the United States is limited and does not robustly capture aspects of resilience that may be particularly meaningful for Latinx populations, such as community or cultural factors. Instruments that are developed with and for Latinx populations are necessary to better understand and measure resilience in this population.

6.
J Immigr Minor Health ; 25(4): 925-952, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-36318437

RESUMEN

Smoking is the leading cause of preventable disease and death in the United States. The risk of smoking poses an even greater threat for racial/ethnic minorities, particularly Black and Hispanic cancer patients who face a range of existing disparities in healthcare. Despite these risks for poor health outcomes among this population, little is known about the smoking behaviors of Black and Hispanic cancer patients. The purpose of this review was to understand differences in smoking prevalence, intensity, and cessation between Black, Hispanic, and non-Hispanic White cancer patients and survivors. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) approach as our framework, we conducted a systematic review of the literature. Our review discusses the methods, population, and implications of 37 included articles. Conclusions reflect the need to establish intentional and systematic measurement of smoking behaviors to best understand the risks of smoking among Black and Hispanic cancer patients.


Asunto(s)
Etnicidad , Neoplasias , Fumar , Humanos , Población Negra , Conductas Relacionadas con la Salud , Hispánicos o Latinos , Estados Unidos/epidemiología , Blanco
7.
J Ethn Subst Abuse ; 22(3): 644-658, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-34597244

RESUMEN

Latinx youth, members of an ethnic minority group growing faster than the national growth rate, are at increased risk of experiencing adverse childhood experiences (ACEs) but it remains unclear how ACEs relate to externalizing behaviors, such as substance use and behaviors leading to injury and violence, in this population. In a sample of 100 Latinx youth, the current study examined how ACEs related to drug use and behaviors leading to injury and violence. Exposure to ACEs was associated with increased drug use, and that association was significantly moderated by behaviors leading to injury and violence for Latina adolescents. Given these findings, more attention needs to be diverted to screening for ACEs and externalizing behaviors in Latina girls.

8.
JAMA Netw Open ; 5(6): e2216362, 2022 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-35679043

RESUMEN

Importance: Guidelines recommend cancer care clinicians offer smoking cessation treatment. Cost analyses will help stakeholders understand and plan for implementation of cessation programs. Objective: To estimate the incremental cost per quit (ICQ) of adopting an intensive smoking cessation intervention among patients undergoing treatment at cancer care clinics, from a clinic perspective. Design, Setting, and Participants: This economic evaluation, a secondary analysis of the Smokefree Support Study (conducted 2013-2018; completed 2021), used microcosting methods and sensitivity analyses to estimate the ICQ of the interventions. Participants included patients undergoing treatment for a broad range of solid tumors and lymphomas who reported current smoking and were receiving care at cancer care clinics within 2 academic medical centers. Exposures: Intensive smoking cessation treatment (up to 11 counseling sessions with free medications), standard of care (up to 4 counseling sessions with medication advice), or usual care (referral to the state quitline). Main Outcomes and Measures: Total costs, component-specific costs, and the ICQ of the intensive smoking cessation treatment relative to both standard of care (comparator in the parent randomized trial) and usual care (a common comparator outside this trial) were calculated. Overall and post hoc site-specific estimates are provided. Because usual care was not included in the parent trial, sensitivity analyses were conducted to assess how assumptions about usual care quit rates affected study outcomes (ie, base case [from a published smoking cessation trial among patients with thoracic cancer], best case, and conservative case scenarios). Results: The per-patient costs of offering intensive smoking cessation treatment, standard of care, and usual care were $1989, $1482, and $0, respectively. For intensive treatment, the dominant costs were treatment (35%), staff supervision (26%), and patient enrollment (24%). Relative to standard of care, intensive treatment had an overall ICQ of $3906, and one site had an ICQ of $2892. Relative to usual care, intensive treatment had an ICQ of $9866 overall (base case), although at one site, the ICQ was $5408 (base case) and $3786 (best case). Conclusions and Relevance: In this economic evaluation study, implementation of an intensive smoking cessation treatment intervention was moderately to highly cost-effective, depending on existing smoking cessation services in place.


Asunto(s)
Neoplasias , Cese del Hábito de Fumar , Terapia Conductista/métodos , Análisis Costo-Beneficio , Humanos , Neoplasias/terapia , Fumar/psicología , Cese del Hábito de Fumar/métodos
9.
Psychooncology ; 31(5): 753-760, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-34797953

RESUMEN

PURPOSE: Cancer patients who smoke may experience significant stigma due both to their disease, and negative attitudes and beliefs regarding smoking. We investigated whether internalized stigma differed between currently smoking cancer patients diagnosed with lung or head and neck cancers, other smoking related cancers, and non smoking-related cancers, and whether internalized stigma was associated with psychological distress. METHODS: This cross-sectional analysis used baseline data on 293 participants enrolled in a multi-site randomized smoking cessation intervention trial of patients with recently diagnosed cancer. Internalized stigma was assessed using five Internalized Shame items from the Social Impact of Disease Scale. Smoking-related cancers included lung, head and neck, esophageal, bladder, kidney, liver, pancreatic, colorectal, anal, small intestinal, gastric, and cervical. We used multivariable linear regression to examine whether mean internalized stigma levels differed between individuals with lung and head and neck cancers, other smoking-related cancers, and non smoking-related cancers, adjusting for potential confounders. We further examined the association of internalized stigma with depression, anxiety, and perceived stress, overall and among cancer type groups. RESULTS: Thirty-nine percent of participants were diagnosed with lung or head and neck cancer, 21% with another smoking-related cancer, and 40% with a non smoking-related cancer. In multivariable-adjusted models, participants with lung or head and neck cancers (11.6, 95% confidence intervals (CI) = 10.8-12.2; p < 0.0001) or other smoking-related cancers (10.7, 95% CI = 9.8-11.7; p = 0.03) had higher mean internalized stigma scores compared to those non-smoking-related cancers (9.3, 95% CI = 8.6-10.0). We observed similar positive associations between internalized stigma and depressive symptoms, anxiety, and perceived stress among participants with smoking-related and non smoking-related cancers. CONCLUSIONS: Among smokers, those with smoking-related cancers experienced the highest levels of internalized stigma, and greater internalized stigma was associated with greater psychological distress across cancer types. Providers should assess patients for internalized and other forms of stigma, refer patients for appropriate psychosocial support services, and address stigma in smoking cessation programs.


Asunto(s)
Neoplasias de Cabeza y Cuello , Distrés Psicológico , Cese del Hábito de Fumar , Estudios Transversales , Humanos , Estigma Social
10.
Cancer ; 127(17): 3214-3222, 2021 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-34061973

RESUMEN

BACKGROUND: Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer. METHODS: A survey from 698 survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1-2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0-2 vs ≥3 instances). RESULTS: The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1-2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio [OR], 0.12; 95% confidence interval [CI], 0.06-0.22; material OR, 0.37; 95% CI, 0.19-0.71; psychological OR, 0.10; 95% CI, 0.05-0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship. CONCLUSIONS: Material, behavioral, and psychological financial burden among survivors of childhood cancer is common.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adulto , Supervivientes de Cáncer/psicología , Niño , Costo de Enfermedad , Femenino , Estrés Financiero , Gastos en Salud , Humanos , Neoplasias/psicología , Sobrevivientes
11.
Health Equity ; 5(1): 338-344, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34036218

RESUMEN

Background: Previous research has documented that Latinos report higher levels of stress than other ethnicities and are an increasing portion of the demographics of the United States. While there are many measures to assess stress and other stress-related conditions, there are no systematic reviews to date to assess whether the current measures of generalized stress are valid or reliable in Latinos in the United States. The purpose of this systematic review was to examine the current state of the literature assessing the psychometric properties in stress measures in this population. Methods: We used Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines to review the literature from January 1990 to May 2020 for studies, which measured the psychometric properties of scales measuring generalized stress in Latinos in the United States. Results: Twelve studies measured the psychometric properties of eight scales of generalized stress. The 10-item Perceived Stress Scale, the Hispanic Stress Inventory, the Hispanic Women's Social Stressor Scale, and the Family Obligation Stress Scale show the strongest reliability and validity for measuring stress in Latinos in the United States. Most studies were done in traditional immigration destinations in the United States. Conclusion: While four scales which show acceptable reliability and validity for measuring stress in Latinos in the United States, continuing to develop and further validate these scales within Latino communities will be critical to understand and address Latino stress more comprehensively. Our findings can inform health research and clinical interventions for this at-risk community.

12.
JAMA ; 324(14): 1406-1418, 2020 10 13.
Artículo en Inglés | MEDLINE | ID: mdl-33048154

RESUMEN

Importance: Persistent smoking may cause adverse outcomes among patients with cancer. Many cancer centers have not fully implemented evidence-based tobacco treatment into routine care. Objective: To determine the effectiveness of sustained telephone counseling and medication (intensive treatment) compared with shorter-term telephone counseling and medication advice (standard treatment) to assist patients recently diagnosed with cancer to quit smoking. Design, Setting, and Participants: This unblinded randomized clinical trial was conducted at Massachusetts General Hospital/Dana-Farber/Harvard Cancer Center and Memorial Sloan Kettering Cancer Center. Adults who had smoked 1 cigarette or more within 30 days, spoke English or Spanish, and had recently diagnosed breast, gastrointestinal, genitourinary, gynecological, head and neck, lung, lymphoma, or melanoma cancers were eligible. Enrollment occurred between November 2013 and July 2017; assessments were completed by the end of February 2018. Interventions: Participants randomized to the intensive treatment (n = 153) and the standard treatment (n = 150) received 4 weekly telephone counseling sessions and medication advice. The intensive treatment group also received 4 biweekly and 3 monthly telephone counseling sessions and choice of Food and Drug Administration-approved cessation medication (nicotine replacement therapy, bupropion, or varenicline). Main Outcome and Measures: The primary outcome was biochemically confirmed 7-day point prevalence tobacco abstinence at 6-month follow-up. Secondary outcomes were treatment utilization rates. Results: Among 303 patients who were randomized (mean age, 58.3 years; 170 women [56.1%]), 221 (78.1%) completed the trial. Six-month biochemically confirmed quit rates were 34.5% (n = 51 in the intensive treatment group) vs 21.5% (n = 29 in the standard treatment group) (difference, 13.0% [95% CI, 3.0%-23.3%]; odds ratio, 1.92 [95% CI, 1.13-3.27]; P < .02). The median number of counseling sessions completed was 8 (interquartile range, 4-11) in the intensive treatment group. A total of 97 intensive treatment participants (77.0%) vs 68 standard treatment participants (59.1%) reported cessation medication use (difference, 17.9% [95% CI, 6.3%-29.5%]; odds ratio, 2.31 [95% CI, 1.32-4.04]; P = .003). The most common adverse events in the intensive treatment and standard treatment groups, respectively, were nausea (n = 13 and n = 6), rash (n = 4 and n = 1), hiccups (n = 4 and n = 1), mouth irritation (n = 4 and n = 0), difficulty sleeping (n = 3 and n = 2), and vivid dreams (n = 3 and n = 2). Conclusions and Relevance: Among smokers recently diagnosed with cancer in 2 National Cancer Institute-designated Comprehensive Cancer Centers, sustained counseling and provision of free cessation medication compared with 4-week counseling and medication advice resulted in higher 6-month biochemically confirmed quit rates. However, the generalizability of the study findings is uncertain and requires further research. Trial Registration: ClinicalTrials.gov Identifier: NCT01871506.


Asunto(s)
Consejo/métodos , Neoplasias/diagnóstico , Cese del Hábito de Fumar/psicología , Templanza/psicología , Dispositivos para Dejar de Fumar Tabaco , Anciano , Bupropión/efectos adversos , Bupropión/uso terapéutico , Cotinina/análisis , Consejo/estadística & datos numéricos , Técnicas de Apoyo para la Decisión , Femenino , Humanos , Masculino , Persona de Mediana Edad , Entrevista Motivacional , Satisfacción del Paciente , Selección de Paciente , Saliva/química , Fumar/tratamiento farmacológico , Fumar/epidemiología , Fumar/psicología , Agentes para el Cese del Hábito de Fumar/efectos adversos , Agentes para el Cese del Hábito de Fumar/uso terapéutico , Teléfono , Dispositivos para Dejar de Fumar Tabaco/efectos adversos , Vareniclina/efectos adversos , Vareniclina/uso terapéutico
13.
Fam Syst Health ; 38(3): 232-241, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32955282

RESUMEN

Background: Disparities in health care access for Latinos are well documented, but little is known about how they may impact immigrants from diverse countries of origin differently. Immigrants in nontraditional destination areas face greater disparities, allowing more robust comparison of Latino heritage groups in such regions. Method: Mexican (N = 258) and Guatemalan (N = 143) participants were recruited for a community-based participatory research (CBPR) initiative in Cincinnati, Ohio: Latinos Unidos por la Salud (LU-Salud). Community partners recruited Latino immigrants to complete a brief survey about health care difficulties. Mixed methods data analysis was employed using t tests, Fisher's exact test, and a qualitative content analysis approach to analyze group differences. Results: Although both groups reported challenges, Guatemalans reported greater difficulty navigating health care. Conversely, Mexicans more commonly used local resources like health fairs to seek health information and described fewer language barriers. Qualitatively, Guatemalans and Mexicans had different perceptions of the biggest health problem for Latinos in Cincinnati. Notably, Mexicans identified major chronic diseases as community health problems. Discussion: Mexicans and Guatemalans show different patterns of health care engagement and express distinct concerns. Future work should consider the role of health literacy in informing the heterogenous experiences and needs of Latinos from diverse countries of origin. Further, interventions should train health care providers to provide culturally sensitive services, with interpreters available in multiple languages to address heterogenous language needs. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Asunto(s)
Competencia Cultural/psicología , Emigrantes e Inmigrantes/psicología , Accesibilidad a los Servicios de Salud/normas , Hispánicos o Latinos/psicología , Satisfacción del Paciente , Adolescente , Adulto , Anciano , Investigación Participativa Basada en la Comunidad , Emigrantes e Inmigrantes/estadística & datos numéricos , Femenino , Guatemala/etnología , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Masculino , México/etnología , Persona de Mediana Edad , Ohio
14.
Support Care Cancer ; 28(10): 4979-4988, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-32034513

RESUMEN

INTRODUCTION: Exercise is recommended for all patients with cancer, but there has been limited study of exercise habits in patients across the spectrum of illness. PURPOSE: This pragmatic survey aimed to identify the unmet supportive care needs, self-reported symptoms, and exercise habits among both cancer survivors and patients living with advanced disease to determine adherence to exercise guidelines and to identify barriers and opportunities to improve exercise. METHODS: An anonymous cross-sectional self-administered paper survey was distributed to patients with cancer presenting for oncology clinic visits at an academic cancer center. Survey measures included presence of symptoms and health problems in addition to weekly time spent exercising, change in exercise levels since diagnosis, interest in exercise, and self-reported barriers. Participants reporting at least 150 min of exercise per week were characterized as adherent to guidelines. RESULTS: Among 640 survey respondents, 570 (89%) completed questions about exercise. Only 44% of cancer survivors and 34% of patients living with advanced disease met current guidelines. Survivors who met exercise guidelines had a lower prevalence of fatigue and memory impairments, but this finding was not seen among patients with advanced cancer. Over 70% of patients with advanced disease and 47% of survivors reported decreasing exercise post-diagnosis compared to pre-diagnosis. Prominent barriers to exercise among both groups included burden of illness and time constraints but interest in increasing exercise was high. CONCLUSIONS: There is an opportunity to improve exercise and related outcomes among a large percentage of both cancer survivors and patients living with advanced disease.


Asunto(s)
Supervivientes de Cáncer , Ejercicio Físico/fisiología , Ejercicio Físico/psicología , Neoplasias/rehabilitación , Anciano , Estudios Transversales , Femenino , Hábitos , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Neoplasias/fisiopatología , Neoplasias/psicología , Cuidados Paliativos/métodos , Sistemas de Apoyo Psicosocial , Encuestas y Cuestionarios
15.
Oncologist ; 25(1): 78-86, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31492767

RESUMEN

BACKGROUND: Oncology research increasingly involves biospecimen collection and data sharing. Ethical challenges emerge when researchers seek to use archived biospecimens for purposes that were not well defined in the original informed consent document (ICD). We sought to inform ongoing policy debates by assessing patient views on these issues. MATERIALS AND METHODS: We administered a cross-sectional self-administered survey to patients with cancer at an academic medical center. Survey questions addressed attitudes toward cancer research, willingness to donate biospecimens, expectations regarding use of biospecimens, and preferences regarding specific ethical dilemmas. RESULTS: Among 240 participants (response rate 69%), virtually all (94%) indicated willingness to donate tissue for research. Most participants (86%) expected that donated tissue would be used for any research deemed scientifically important, and virtually all (94%) expected that the privacy of their health information would be protected. Broad use of stored biospecimens and data sharing with other researchers increased willingness to donate tissue. For three scenarios in which specific consent for proposed biobank research was unclear within the ICD, a majority of patient's favored allowing the research to proceed: 76% to study a different cancer, 88% to study both inherited (germline) and tumor specific (somatic) mutations, and 70% to permit data sharing. A substantial minority believed that research using stored biospecimens should only proceed with specific consent. CONCLUSION: When debates arise over appropriate use of archived biospecimens, the interests of the research participants in seeing productive use of their blood or tissue should be considered, in addition to addressing concerns about potential risks and lack of specific consent. IMPLICATIONS FOR PRACTICE: This survey evaluated views of patients with cancer regarding the permissible use of stored biospecimens from cancer trials when modern scientific methods are not well described in the original informed consent document. The vast majority of patients support translational research and expect that any biospecimens they donate will be used to advance knowledge. When researchers, policy makers, and those charged with research oversight debate use of stored biospecimens, it is important to recognize that research participants have an interest in productive use of their blood, tissue, or data, in addition to considerations of risks and the adequacy of documented consent.


Asunto(s)
Bancos de Muestras Biológicas/normas , Consentimiento Informado/normas , Prioridad del Paciente/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
16.
J Oncol Pract ; 15(9): e787-e797, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31298966

RESUMEN

PURPOSE: Fear of cancer recurrence is highly prevalent among adult survivors of cancer. The role of fear of recurrence in the emotional distress of survivors of cancer, as well as health behaviors that may directly affect their health, remains unclear. To advance oncology practice, this study sought to examine the extent to which fear of recurrence stemming from physical symptoms accounts for emotional distress in a large sample of adult survivors of cancer and to extend the model to explain postdiagnosis self-reported health behavior change. METHODS: In 2016, 258 survivors of cancer at an academic hospital completed a survey of psychosocial needs. Items assessed physical symptoms (checklist), fear of cancer recurrence (Assessment of Survivor Concerns), emotional distress (anxiety and depressed mood), and health behaviors (current alcohol use, physical activity, diet, and sunscreen use, as well as changes after cancer diagnosis) informed by National Comprehensive Cancer Network survivorship guidelines. Indirect effects regression models accounting for relevant covariates (age and treatment history) used 5,000-iteration bootstrapping. RESULTS: Higher fear of cancer recurrence was associated with greater number of physical symptoms (P < .001), greater emotional distress (P < .05), lower moderate or vigorous physical activity (P < .05), higher sunscreen use (P < .05), and postdiagnosis increases in alcohol use (P < .01) and reductions in physical activity (P < .01). Fear of cancer recurrence models accounted for almost half of the variance in distress of survivors of cancer (R2 = 0.44, P < .001) and, to a lesser yet significant extent, changes in alcohol consumption (R2 = 0.09, P < .001) and physical activity (R2 = 0.06, P = .003). CONCLUSION: Fear of cancer recurrence plays a central role in the emotional distress and key health behaviors of survivors of cancer. These findings support fear of cancer recurrence as a potential target for emotional health and health behavior change interventions.


Asunto(s)
Supervivientes de Cáncer/psicología , Emociones , Miedo/psicología , Conductas Relacionadas con la Salud , Neoplasias/epidemiología , Neoplasias/psicología , Distrés Psicológico , Supervivientes de Cáncer/estadística & datos numéricos , Femenino , Humanos , Masculino , Salud Mental , Recurrencia Local de Neoplasia , Vigilancia en Salud Pública , Calidad de Vida , Factores Socioeconómicos , Estrés Psicológico
17.
Oncologist ; 24(12): 1577-1583, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31182655

RESUMEN

BACKGROUND: As scientific techniques evolve, historical informed consent forms may inadequately address modern research proposals, leading to ethical questions regarding research with archived biospecimens. SUBJECTS, MATERIALS, AND METHODS: We conducted focus groups among patients with cancer recruited from Massachusetts General Hospital to explore views on medical research, biobanking, and scenarios based on real biospecimen research dilemmas. Our multidisciplinary team developed a structured focus group guide, and all groups were recorded and transcribed. Transcripts were coded for themes by two independent investigators using NVivo software. RESULTS: Across five focus groups with 21 participants, we found that most participants were supportive of biobanks and use of their own tissue to advance scientific knowledge. Many favor allowing research beyond the scope of the original consent to proceed if recontact is impossible. However, participants were not comfortable speaking for other patients who may oppose research beyond the original consent. This was viewed as a potential violation of participants' rights or interests. Participants were also concerned with a "slippery slope" and potential scientific abuse if research were permitted without adherence to original consent. There was strong support for recontact and reconsent when possible and for the concept of broad consent at the time of tissue collection. CONCLUSION: Our participants support use of their tissue to advance research and generally support any productive scientific approach. However, in the absence of broad initial consent, when recontact is impossible, a case-by-case decision must be made regarding a proposal's potential benefits and harms. Many participants support broad use of their tissue, but a substantial minority object to use beyond the original consent. IMPLICATIONS FOR PRACTICE: For prospective studies collecting tissue for future research, investigators should consider seeking broad consent, to allow for evolution of research questions and methods. For studies using previously collected tissues, researchers should attempt recontact and reconsent for research aims or methods beyond the scope of the original consent. When reconsent is not possible, a case-by-case decision must be made, weighing the scientific value of the biobank, potential benefits of the proposed research, and the likelihood and nature of risks to participants and their welfare interests. This study's data suggest that many participants support broad use of their tissue and prefer science to move forward.


Asunto(s)
Bancos de Muestras Biológicas/normas , Neoplasias/fisiopatología , Bancos de Tejidos/normas , Femenino , Grupos Focales , Humanos , Masculino
18.
J Oncol Pract ; 15(7): e600-e606, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-31150311

RESUMEN

PURPOSE: There is a need to improve the coordination of care and communication between primary care physicians (PCPs) and oncology after completion of initial cancer treatment. We sought to evaluate PCP experiences and perspectives in cancer survivorship and to identify practical opportunities to improve care within an integrated health care system with a shared electronic health record (EHR). METHODS: We conducted a self-administered, anonymous, electronic survey of PCPs in practices affiliated with an academic medical center to evaluate practices, the sense of preparedness, and preferences in the delivery of survivorship care and communication with oncology. RESULTS: One hundred seventeen of 225 PCPs responded (response rate, 52%). A majority were engaged in survivorship care, with 94% reporting managing psychological sequelae of cancer, 84% managing chronic physical complications, 71% screening for cancer recurrence, and 60% screening for late complications. However, few PCPs felt prepared to manage these issues: 65% felt unprepared to screen for late complications, and 36% felt unprepared to screen for recurrence. Common barriers to survivorship care were uncertainty about delegation of responsibility (73%) and a lack of training (72%). PCPs expressed strong interest in survivorship care plans, preferring active tracking of ongoing care needs and delegation of care responsibility in the EHR active problem list over traditional summary documents. CONCLUSION: Most PCPs are engaged in cancer survivorship care but report barriers to optimal care delivery. Opportunities to improve care could include targeted education to increase preparedness to deliver survivorship care, and optimization of communication among providers, including active survivorship care plans in the EHR.


Asunto(s)
Supervivientes de Cáncer , Continuidad de la Atención al Paciente , Médicos de Atención Primaria/psicología , Adulto , Anciano , Actitud del Personal de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Encuestas y Cuestionarios
19.
J Cancer Surviv ; 12(5): 639-646, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-29943170

RESUMEN

PURPOSE: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services. METHODS: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services. RESULTS: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance. CONCLUSION: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care. IMPLICATIONS FOR CANCER SURVIVORS: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.


Asunto(s)
Atención Ambulatoria/métodos , Enfermedad Crónica/epidemiología , Seguro de Salud/normas , Neoplasias/epidemiología , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Adulto Joven
20.
Cancer Med ; 7(7): 3484-3491, 2018 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-29905013

RESUMEN

Many patients with cancer use electronic cigarettes (e-cigarettes), yet little is known about patterns and reasons for use. Using cross-sectional baseline data from a randomized controlled trial, we aimed to describe prevalence and correlates of e-cigarette use, frequency of use, and reasons for use among smokers recently diagnosed with cancer. Participants (n = 302) included adults (age ≥18 years) recently diagnosed with varied cancer types who smoked ≥1 cigarette within the past 30-d from two US academic medical centers. Participants reported ever and current e-cigarette use, and current e-cigarette users reported days of e-cigarette use and the main reason for use. We compared current, former, and never e-cigarette users by sociodemographics, cancer type, medical comorbidities, smoking behaviors, attitudes, and emotional symptoms, and described use among current e-cigarette users. Of smokers recently diagnosed with cancer, 49% (n = 149) reported ever e-cigarette use and 19% (n = 56) reported current use. Of current e-cigarette users, 29% (n = 16) reported daily use. Current e-cigarette users did not differ from former and never e-cigarette users by cancer type, smoking behaviors, or emotional symptoms. Women were more likely to be current users than never users, and current e-cigarette users had less education than former users. Most current e-cigarette users reported using them to help quit smoking (75%). One in five smokers with cancer report current e-cigarette use, but most are not using e-cigarettes daily. The majority report using e-cigarettes to quit smoking. E-cigarette use by patients with cancer appears to reflect a desire to quit smoking.

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